When A Light Goes Out

“It's so much darker when a light goes out than it would have been if it had never shone.”  John Steinbeck, The Winter of Our Discontent

It has been a long time again since I put words to the screen and I failed in my repeated efforts to write a post surgical update after the operation on Feb 10th. It wasn't an easy ordeal but I will save that for another day. Today is for someone else.

Yesterday, the snow fell especially hard and covered the roads, trees and houses with snow that looked just like powdered sugar. There was a real beauty about it as it crunched under my feet as I walked. It was also the day, I joined a number of other mourners to celebrate the life and the loss of a wonderful person that I had the pleasure of knowing. I am not going to pretend to say that we were the best friends because we weren't but we shared a special and unique bond of cancer and through that bond, we had an openness in the way we talked and communicated. I remember the first time we met in person and three hours flew by and we hadn't even gotten through half of what we wanted to say. It was easy and effortless because we understand each other and the struggles of this disease at a young age. And all the extra challenges that come with it. There was an unspoken understanding.

When I found out that she had lost her battle, I was in shock and it sent a jolt to my heart. The tears prickled my eyes. I immediately thought back to the fact that we had been trying to see each other over the last 4 weeks and I just didn't find a free moment after my surgery. Life got in the way as it does and now I ache at my inability to prioritise. Life waits for no one.  Last night, I read back our messages that spanned two years and thought how strange the world is that we live in. With social media, email, text messages...everyone becomes immortal. There is always a trace of their life for us to read, to see, to hear and to remember. Nothing disappears. Facebook pages become unofficial memorial pages where we write to the person as if there were still here.

I spent a lot of yesterday thinking about her. Thinking about her and her family - their pain and infinite loss that was so fresh and sharp. About the unfairness of this disease and the random way it picks its victims. When you are told you have cancer, you join this special club where you learn to live with uncertainty and an utter lack of control over your situation. At the end of the day, it comes down to sheer luck in terms of what those pesky cells decide to do. No doctor, no amount of chemo or radiation will ensure anything. And that randomness makes no sense at all and it messes with our inate human instinct to want to explain away everything. But there is no explanation for why a young mother is forced to leave her family behind? It makes no bloody sense at all! And why they had to also struggle through extraordinary amounts of pain and suffering despite being a loving and gentle soul.

When I think back to my own relapse which is now nearly 3 years ago, there was a group of women who also suffered the same fate at the same time. But today they are all also gone. Leaving behind children, husbands, mothers, fathers, questions unanswered and lives unfinished. Why? It makes me mad thinking about why someone survives and another doesn't and it is also utterly terrifying. On the other hand, it is so messed up to think that I was and am so damn lucky to be alive yet at the same so terribly unlucky for having lived through two terrible breast cancer diagnoses. It really messes with your state of mind and even brings up feelings of survivor guilt. I feel a real duty to these fallen comrades to be out their living life to the max and grabbing life by the balls. But when i look at my life, I don't feel so great. I live with chronic pain that keeps me up at night, I survive on narcotics that I have to someday ween myself off, my body is a battlefield of scars and I live in constant fear that it will all come back. It is hard to push through these challenges and go out and dance in the rain and live life as if everyday were the last. Yet I feel terrible complaining about anything because it all could have been so much worse.  How do I find the balance? How do I honour these women and the robbery of a long life they lost and still be gentle with myself?

So today, I am thinking of that new angel who got her wings and joined an elite group of pink heroes who should remind all of us that life is precious. Forget pride, forget anger, forget who's right and wrong, forget what you think you know and forget living like you have a million tomorrows. I get so angry when I see people act unkindly to one another, or stress about something that really isn't that big a deal. Is it really that important? Is it worth losing time over? I can bet you anything that that lovely woman who left this earth this week, would have given anything for another tomorrow, Let's not waste ours.

Rest in peace my friend.

OBB

Why It Hurts

“There are memories that time does not erase... Forever does not make loss forgettable, only bearable.” 
― Cassandra Clare, City of Heavenly Fire

As I have done a lot lately, I have tried to write this blog entry many many times before. But once I wrote the last word, something held me back from putting it on here for everyone to see. I can’t put my finger on it exactly - what it is that is wrong with them. Maybe I was too honest, or maybe I was too dark or maybe it was a band-aid job to cover what I really wish I had the guts to say. Whatever it was, those graveyard entries were not meant to be so I am hoping that when I get to the end of this one, I will press “publish” and finally get some words out there into the web universe. I will start with the good news. I did in fact ace my last PET scan which my Facebook world would have found out about many weeks earlier. This is becoming a regular thing and it is truly fantastic to continue on in this state of remission. The whole scanning process is a mental rollercoaster - you go up, you go down and basically all around the entire spectrum of emotions. I am always so shocked how weird I feel afterwards. I feel like I should be screaming from the rafters, cracking open a crazy pricey bottle of bubbles and celebrating this special thing called Life! But I often feel lost, angry and confused by my own reactions. You prepare yourself for every possible alternative and I guess that mental exercise really messes with you. I always recall those precious moments before I head to the hospital to get the results and I always think - “Are these the last real normal moments I have before I take a sudden turn down an incredibly dark road with no way out?” It is always when I am giving my daughter her last hug and kiss and hoping this isn’t our last untainted memory before it all falls apart again. Having to even entertain those kind of thoughts must really mess with your head and might explain the weird place I am often in after this process concludes. So we are still cancer free. What’s next? Ever since a cold and dark day in November, 4 years ago in a fluorescent lit doctors consultation room, I was told I was special, that I was a mutant and that parts of my body wanted to actually kill me. It wasn’t a total shock, I had been expecting it in a way and it also gave a logical reason why a 31 year old new mother would suddenly be fighting cancer with no warning. In a freaky messed up way, it made sense out of the madness swirling around me. It answered the crazy question why my mother and I ended up fighting breast cancer at the exact same time. I had the BRCA 1 gene or as I apallingly read lately in an article - the Angelina Jolie gene. Sorry Angelina but it ain’t yours and there really is nothing sexy or glamourous about this gene. Ever since that day, my journey got a little longer and a lot more complicated. First, we removed my one lone healthy boob to give me some asexual symmetry. It was a good thing I decided that at the time because had I reconstructed the one, I would have been external uni boob, as after all the extra radiation treatments, scarring and surgeries, there is no chance that I will ever be given a new pair for Christmas. This the boob-free body I will live and die with folks. So with two bombs gone, there was only one more to deal with. It has been the harder of the two because of what it signified and of what it would be taking away. BRCA 1 gave me an almost 85% chance of getting breast cancer but it also gave me a 75% chance of getting ovarian cancer. So what does a girl do next? She removes what she has to in order to stay alive because what other choice is there. Now I have been public with my struggles to want a second child and I dreamed that maybe it would become real one day if I survived my relapse. My logical side told me it was impossible and taking risks weren’t worth it after everything but the fantasy side of me kept on dreaming and wishing that maybe it could happen. This dreaming wasn’t helped by my daughter’s strong desire for a sister and her constant questions as to why I couldn’t give her one - just one. It was so hard to hold in the tears whenever she asked me that - knowing the answer that she would just never understand..not now. But after chasing after my little miracle and searching high and low for some doctor to tell me there was a way, I have come to the point of acceptance that this isn’t going to happen. The decision has been made and the grieving must now begin. On Wednesday morning this coming week, I will walk into the hospital and resign myself to the fate that I have been given. No more fighting, no more dreaming. The time for those things has come to an end. Now there is nothing but the eery silence that comes with the reluctant acceptance of a situation you no longer have the strength to fight. It is really quiet now. Only I can hear the tiny aches of my broken heart or the little sobs that I hold deep in my throat so that no one can hear my pain. Like when you squint your eyes up so tight and hard to hold in those tears that so desperately want to flow. Because you know if you let just one tear escape, there is waterfall of pain following closely behind it and you just don’t have the strength to keep it all in and you don’t want anyone to know how much it hurts. That is how I feel right now and that it how I will feel when I put my brave face on. That mask has come out so many times over the last few years that its edges have become worn and bent kind of like my heart feels today. So I will need the strength of a thousand armies and the bravery that only a mother would know. To tell myself why I am doing this - it’s for them I whisper quietly under my breath. It’s to keep me here for them. That’s the most important thing in the world right now. And when the scars have healed on the outside, I will start the healing on the inside and hope that it will all be okay. It will all be worth it because I am here and the pain will be weakened by their love. I just wish it could be easier sometimes….some days feel so much bigger than you can handle and I already feel engulfed by what it waiting for me in just a few days. I just need to keep my eyes on the lifeline that I building through all these decisions that will keep me connected to my little family. I will be alright... I have to be.

OBB

Coming Back from the Wars

"It was hell to be so tired, and still care." Lois McMaster Bujold, Shards of Honour

I hate when I start a blog on a low note and go straight into all that is wrong with my world. I feel like the nature of all my correspondence recently has also been following the depressed debbie theme and I worry that i am bringing everyone around me down too. I just don't want to be that person who is always negative and when asked how I am doing always has crap things to say. I personally hate talking to people like that myself so I just cannot become that person but I fear that I am. But how do you get around some pretty big issues that are weighing you down tremendously? Do I pretend they aren't there? Is it my fault that I have been chronically ill for years now and am just being honest when I describe what is wrong? It is a conundrum in every sense of the word.

I have been feeling like between a rock and a hard place the last 2 weeks and struggling with some things. First off I got so sick last week and could not even make it up the stairs. I know there is something wrong when I can't even muster up enough energy to read to my daughter at bedtime. That is a sacred special time between the two of us that I rarely miss but I just couldn't do it. Every inch of my body was throbbing with pain and I felt just like I did when I did "sickplatin" last year. Being sick sucks but being sick when you have been sick for so long is even crappier. Your threshold is decidedly lower on what you can handle and I genuinely wanted to scream. Nearly two weeks on, I am not okay and there are no answers as to why. I have had blood tests, doctor visits and even a gastroscopy a few days ago which frankly sucks. I am sure some of you have had it before as we seem to live in a world where stomach ulcers and ailments are commonplace in our hyped up over stressed existence. Well having had most of the more heinous medical procedures on offer these days, this one was downright violent. I felt like a POW at Guantanamo Bay being water-boarded! They forgot to freeze my throat perhaps in the confusion of trying to find a good vein (which is never an easy job) so it hurt. You dry heave the entire time and it is just plain yuck. I signaled twice for them to stop during but of course once you all the way in, you don't come out until you are finished. Seeing as my stomach issues have become far worse in the last 2 weeks, we were wondering what we would find in there. Having been on max prescription anti acid meds for nearly a year now with no relief and regularly feel sick, I was certain something would be there.  But there was nothing to see. No ulcers, no nothing...just a whole lot of stomach lining. So what the hell is wrong? Why do I feel nauseous all the time, why does my stomach burn like hell, why do I feel sick after every meal??? This can't just be normal and I am frankly frustrated. And I am so bloody tired. One of my doctors on the Palliative Ward who met me on Wednesday this week took one look at me and said that she had never seen me look so wiped out and exhausted as I did than. She isn't the only one to remark this as many others have said the same and the proof is in the pudding. I feel like I walking around with weights in my shoes and everything just seems to ache. What is wrong with me??

It has put considerable stress on me and my work as well and that is where I find things so hard to balance. I care so much about doing a good job and despite having been ill, I rarely if ever take an actual "sick day". If I have to be home with my daughter when she is sick, I will work from home and get the job done. Since I came back to work, I have been desperately, if not obsessively, been trying to show my worth there and not be seen as the sick girl who can't hack it. That is one of the real challenges of becoming so ill at a time in your life when you should be rising to the top of your career and everything else coming together. I thought that would have been me too but instead I am crawling up this mud hill and keep falling back a few paces over and over again. I feel trapped because I need to work to make a living and I need to do something that challenges me. But how do I do this and also put my health first? It seems impossible to me right now. It is clear to myself and everyone around me that I am not doing that at all and I am on a slippery slope, gambling on a dangerous game where I wonder if tomorrow will be the day my body just gives up. I know that I am not far from that point but I don't know what to do. I can't just give up and I don't want to. Giving something else to the cancer that ate into my life is not what I want to do. It has taken far too much already but at the same time how do I deal with this? Everyone tells me to put my health first but the reality is that my job isn't one where you can just not show up for a day, a week, a month...And I know I wont survive another absence. So I am stuck in this perineal hamster wheel going around and around day after day, getting angrier, more tired and more confused. What would I do if I didn't have to worry about my everyday commitments? I have some ideas about it but it is a scary question to ask and the fear of the unknown engulfs me. My job is such a big part of who i am and it is so difficult to start to see that maybe I need to be the bigger and more important part. To be honest I find this all scary as hell - contemplating the big questions and coming to terms with the fact that things are not the way they are and I am not the same as I was. Where do I get help navigating this rough road? Just being told to stop working isn't realistic for me. But pushing and pushing to the point where the gas tank is empty is ridiculous but that is exactly what I am doing.

This brings up something I think about often - how devastating cancer can be when it hits at a time like your 30s. I feel like your 30s are the time that the foundation is built from which everything else grows from. You establish your career, you buy a house, you can meet your partner for life, you start a family, and you start to think like an adult.  I know that is what happened to me. So what happens when that grand master plan gets thrown out the window? What happens when you are so ill that you will never get back to the physical condition you were in before so that you can never work in the same way? What happens when you lean on savings to fill the gap due to loss of income because of unexpected illness and your buffer is suddenly gone? What happens when seemingly overnight your partner must become your caregiver and the nature of your relationship sharply shifts away from that of husband and wife? What happens when your young body becomes marred and permanently disfigured for the rest of your life? And what happens when you can't have the family you always dreamed for? That is what cancer can do when it hits at this supposed prime of your life. It is so destructive and ruthless in what it takes from you and is so far from being a gift in my mind. Things are never ever going to be the same for me and I am terrified. Maybe this is how it feels when you come back from war? You are so very different from the person who left to fight and now you must reintroduce yourself back into a life you no longer know how to cope with. Everything is different because you are different and have seen and experienced things no one will understand unless they were doing it right alongside of you.

What I can see now is that the last 10 months, I have been desperately trying to build back everything I lost even if it means putting myself and my wellbeing last. A friend asked me yesterday how I would feel if for some reason all of this intense stress and work resulted in me getting sick again. How would I feel about it? Would any of it have been worth it? The answer to that question is easy to answer but why is doing it so much tougher for me? I just find all of this so god damn hard to deal with right now and when you are exhausted everything seems to much worse.

I want to digress slightly here as I want to address some comments that came out of my last entry regarding fertility and babies. Many of you were so supportive and had many great ideas as to what else I could do. I did have my appointment with the oncology doctor this week and sadly they shot down every single one of my ideas. It was a blow and maybe it is time to seek additional opinions. Getting second opinions in Norway just isn't done. You take what the doctor says for gospel and never question it. But this is so final that perhaps i need another viewpoint.

I have a lot to think about right now. I just need to figure out what the next move will be.

And please don't take my lack of contact personally. I am struggling with everything these days and am just out of energy. I hope you will reach out all the same as I still value the support from my peeps and desperately need a pick me up.

 A pretty wiped out OBB

A Box of Dreams

"The truth is, unless you let go, unless you forgive yourself, unless you forgive the situation, unless you realise that the situation is over, you cannot move forward." Steve Maraboli

There is a box up in our attic that has stood on its own off in a corner surrounded by other discarded, unused items...waiting. From the outside looking in, most people wouldn't realize what the contents mean to Its owner unless that owner was me. I started putting things into this box shortly after the start of my first remission. I allowed myself to put some of my dreams away during a time of uncertainty and painfully discarded almost everything else in an effort to rip the band aid off and try to get on with it. Life as I knew it would never ever be the same again. But because of who I am and because of how I always believe in hope, I hung on and believed that maybe, just maybe I would take this box back out of its dark dust bunny existence again.

My meeting with my doctor a few weeks ago obviously reaped amazing results and it allowed us to cross another big tick off our cancer check list. Remission - check check. But something else happened that seemed to be dismissed into the background seeing as how huge the good news was. This was also the day that my dreams were crushed into hundreds of tiny jagged pieces...quietly silenced by the big C. I think my doctor had just been playing along with me and my delusions the last few years as he deep down knew that many of my what if conversations were not at all relevant if I didnt actually survive. Survival was paramount and everything else just "stuff." But this time was different, he gave me straight answers to the things I had wondered about since I first got sick. Before it was all vagueness and skirting around the big issues but now it was time to face the music. I guess I should look at this as a good sign because real answers maybe mean that he actually believes that I will beat this thing now so I could handle the truth. No more pretending to the cancer patient about the big unknowns.

I have always been very open in my blog about the situation with my faulty genes. If not open about pretty much everything.  Not only did I get the lucky boob lottery but I also had ticking time bombs in the form of my ovaries joining in the battle. My body literally wants to attack me and the only thing I can do is cut parts of it out. Barbaric yes? Other options? None. If you are fortunate to find this kind of info out before hand, you are given a chance to plan ahead and make choices without cancer already invading your body. Definitely not easy decisions but everyone wants to be able to do something first because losing all the power and control. Like having all your children first and removing your bits last. Avoiding cancer completely. I wish I had had the chance to do all of these things instead of playing the catch up again. If only I had a time machine...

So the situation is as follows:

The clock is up suddenly as things have changed for me and I need to get my ovaries out after my next birthday. Happy fucking 35th birthday to me! A hysterectomy and instant menopause sounds frickin' fantastic to me! I think in some ways this is scarier because unlike removing your breasts, things actually happen to you that you feel that are really really shitty. How can I possibly be ready to be a woman in her mid 30s with no breasts, no ovaries and no sense of myself as a woman? It just isnt fair and it never feels like any of this ever ends. I keep giving things up and getting so little back in return. It is like there is a proverbial dark monster waiting around every corner after having already beaten the last one to a pulp. It is exhausting to have to constantly face the unknown and lose bits of yourself both physically and emotionally along the way. I am tired of being brave and cracking a joke to make it all seem okay. It just isn't okay.

The second part of the story goes back to my box that I mentioned farther up. That box contained the most special items that I have kept from my daughter's first breath until today. My dream box where I put all my hopes into that one day when I just might take these things out again for another baby. What could it have been? Another girl or a boy? I will never ever know and it makes my heart ache with heaviness and loss. I had been getting more used to the idea of it just being the three of us again but suddenly having the power of choice being taken away from me brings the hurt all back again. This is it for me and god does it hurt like hell. I find it unbelievably unfair that my husband and I aren't going to bring any other beautiful children into the world seeing as how much we adore kids - not to mention what amazing parents we are. But life rarely makes sense and is often unfair so feeling that way is pointless. When I think back to my younger years, I always imagined there being two. I thought it was the best combination and it gave me comfort knowing that one would never be on its own. Growing up in a family of three, I know how comforting it is to have your siblings to lean on and support you. Like when my father died tragically - we stuck together and pulled each other through it. Or (on a much more superficial note) when my sister lent me her bodysuit to wear to the school dance to impress said boy of the month. Who will pull her through the hard times or teach her how to replace the vodka in the liquor cabinet with water? You just dont want to imagine your child shouldering the burden of everything themselves but this is the reality we are living now. I will just have to work extra hard to give her the most loving life she will know and prepare her for life as much as I can.

I also need to stop allowing myself to feel so out of place and awkward when people talk about their lives that are full of extra children, new pregnancies and their own perfect blissful chaos. I feel instantly like an outsider who has nothing to share or say. I dont know what it feels like to look after siblings or how to get three kids out the door at breakfast time and I never will.  I rarely felt out of place before all of this cancer business but now when others discuss the challenges of juggling all their kids and how hard it all is, I secretly want to scream out loud and say how lucky they all are. I will never know what that feels like and I hate the reasons for it. And for those of you reading this who are my friends and have lots of kids, I don't want you to feel guilty reading this and please dont shield me from your lives or filter what you say to me because you want to protect me or think it will make me mad. One thing I never have wanted was for others to modify their behaviour or feel they cant be honest about their own lives with me but just by reading this it might help you understand how I feel and how difficult this is for me. And promise me one thing - please don't tell me about how others struggle with fertility or how others never even get to have one so I need to be thankful for the one I have. One thing I am is thankful for every single gift I have been granted in this life and my daughter is by far the greatest gift. I cherish every single moment I get with her almost to the point of obsession. And I am also fully aware of the pain of others but my situation and circumstances are so very different, most importantly because they are my own experiences, my own sufferings. No one likes comparisons and they only seem to inadvertently minimize someone's pain and circumstance. We all carry around our own pain and heartache so I am just giving you a window into mine.

My husband always tells me that I baby our daughter too much, especially during the last few months. I carry her around when I can and take every cuddle I can get. He reminds me that she will be five soon and no longer a baby. But the truth is, she will always be my baby and I selfishly dont want her to grow up because this is the only chance I am going to get. I cling to the tender moments when I am still the center of her world - a princess in her fairytale world. But soon she will be too big for me to lift - a fact she reminds me will reduce me to tears when it happens. I struggle with this knowledge that all too soon this will all be over and these moments will be just memories like those clothes and toys sitting in that lonely box. That is why I hang on for dear life...squeezing every last drop out of everything.

The reality is that I should have never been born with the wonky mutation that taught my cells to produce Death Star tumours. I should have never gotten cancer once...or twice. I should never have had to remove both my breasts and have to now remove my ovaries. I should never have had to have a doctor tell me that I cant have any more children ever again because it could kill me. I should never have had any of this. But unfortunately there are no magic Harry Potter wands that can make it all better again so all we have is time, grief and the hope that things will be better again. So that box will stay up in that dark corner, suspended in time - its contents made up of what could have been. Memories now and forever wrapped in the most amazing blanket of love.

OBB

Being NED

I am late to the party and I am sorry for that. I know silence after a scan can be interpreted as something bad and I don’t ever want any of you to worry. Most of you will already know by now my news but for those of you still waiting…

I am 100% NED!!!! No evidence of disease again. Talk about bitch slapping those malignant cells all the way into next week!

It is always a shock when you get good news and almost a sort of anti-climax. I had convinced myself the night before and the morning of my appointment  that it would be bad. My husband and I had discussed our game plan the evening before the appointment to prepare ourselves for whatever might be. You never go into battle unprepared as we had previously learned. His worst fear was that something would have light up needing further investigation and mine was that I would be told I was dying. Who is the catastrophist here I wonder?  I kissed my daughter goodbye that morning and wondered again whether this would be the last normal moment between us before my world came crashing down again. So many emotions, so many thoughts brought up to the surface.

But the battle plan was not needed and it appears that our enemy has been killed off. For the first in a while I am starting to wonder if maybe this cancer isn’t ever going to return? I know I can’t totally stop worrying about my silent enemy but I do know that 2 clear scans in one year is one hell of a reason to celebrate. My doctor was really pleased but always the cautious one. When I asked him what it meant to have two clear scans in a row in terms of my future he said that the results were “nice.” What a pokerface this guy has and he even told me that he won a pokerface competition! I started thinking later that evening about how this latest news will influence my long term relationship with cancer. It seems like we are growing further and further apart from one another despite what a huge and all-consuming role it has played in my life for over three years now. Will my life really get past a point where cancer is no longer a part of it? It was so hard to imagine a life like that a year ago…where cancer has no purpose or power over me. It is also scary at times as I worry about having to fend for myself and not use my cancer crutch anymore. Will people suddenly expect more from me and excuse my shortcomings less? I said to my doctor that day that one of the things I still struggle with is that because I look good everyone assumes I am 100% strong and healthy. I most definitely don’t feel that way but after having a year of cancer free living, maybe expec tations will return and I will have to be “normal” again? Maybe this is hard to understand because it isn’t about having cancer again but it is about the long road to recovery that becomes harder and harder for others to understand the further out from the disease you become.  I am scared of failing, scared of disappointing people and scared of not hacking it. Cancer took some of the pressure off temporarily but it is all seems to be returning again and I don’t have the same coping mechanisms.

But enough with the mindfuck side of this whole thing, this is a time to dance on the rooftops and drink bubbles until you can fly. I hope you all join me in this celebration from around the world. I will save another entry to get into some of the other issues that came out of Tuesday’s appointment that are heavier in topic because this entry is solely devoted to saying “I am cancer free.”

From your dear friend,

In Remission

Game Day

The time that elapses coming up to a big scan is always "dead time" for me. Like a wave rushing to shore that gets slower and slower until it finally crashes in a Big Bang. I am in the slow mode right now and am finding it hard to navigate this limbo until the crash where all things become known. Things have been going really well for me lately and I have finally become excited for the future again without fearing it as much. I have managed to get my crap together for the third time and it feels good. But now as this day gets closer and closer, I felt like time has started to stand still and will remain so until we got through this hump. It is like pre scan, during scan and post scan time periods and right now I feel this genuine reluctance to let myself get really happy about future plans until I know things are going to be okay. I tell people all the time that by thinking this way it in no way means that I am thinking negatively - I am just being prepared for all possible outcomes. It is safer that way at least for me especially considering my track record. I never want to be caught out ever again by that bitch called cancer.

I have found the weekend exhausting and emotional. And my level of frustration over some physical issues is making me mad. I wanted to scream and cry all at the same time last night because of this damn chest pain that has picked up momentum in the last few weeks. I am just so sick of being in pain and of course my mind plays out a dozen different scenarios surrounding its origins. Any change in anything is utterly terrifying. In addition my stomach has been awful and I just feel sick pretty much after every time I eat. Being chronically bogged down by these chronic ailments all the time when I should be in pretty good shape is demoralizing and I cant exactly talk about it all the time because it is boring. But just because it is boring and constant doesn't make it disappear for me. I live with these things every day and my patience is wearing thin. I want to wake up and feel okay. It is so draining dragging this tired aching body around all day and I feel like my happy face often hides the pain. If i looked at myself most days, I would have no clue what I had been through nor what I am still dealing with. That can be the tricky bit - what truly lies beneath. Because I am the last person who wants to look how I feel and I put so much daily effort into looking like the person I hope I will one day actually feel like. However others can think that the outside matches the inside and not realise what burdens i am carrying along in my fabulous handbag.  Some days I feel like my bones are made of glass seeing as how fragile and weak they feel. I actually awake from the pain I feel when I sleep on my side and my hip presses into my mattress. What am I the bloody princess and the pea? But I keep trying and keep trudging on in the hope that all of this will one day be a bad dream I vaguely remember bits of.

For now - it is game day tomorrow and we will have to wait longer this time before we know what is the score. A whole week of wondering the what ifs until we sit down in a white sterile room trying to read the face of my oncologist again. I keep looking at my skin and pondering what is happening underneath. Are my cells behaving? Or have they commenced their own civil war again? One week is nothing and everything at the same time. So if you have a moment for me tomorrow around 10am send me some happy thoughts and here's hoping my next entry will again be nothing but good news!

Love and hugs from a slightly more fragile than normal OBB.

Putting your Health First

Again it has been about a month since my last entry and it is clear to everyone that this blog is proving to be more and more difficult to stay on top of. This is what happened for over a decade when life got in the way of doing what I love and my creativity dried up when other parts of my life picked up into a frenzying pace. It was only when illness forced me to slow down, that my love of writing was able to come alive again. But I don't want this blog to end because life got in the way, my journey is far from over so I will write when I can and keep you abreast of the important stuff.

I have been thinking a lot about something that I have been told hundreds of times over the last three years. It is something that friends, family, coworkers, my medical team and even strangers have told me over and over. "You must put your health first" they all tell me. Such simple advice but oh so difficult to actually do. Because honestly how many of us actually do that on a regular basis? Some of us smoke, others binge drink, most dont get the required exercise or your 5 a day and I am certain we all sweat the small stuff much more then we ought to. The truth is that life gets in the way of putting ourselves first more often than not. I am the first to put my hand up and say that I am terrible at this. And please don't think that I am playing the victim or martyr card here because I am not but rather I am just being honest. Despite having been seriously ill for about three years, I still push myself to complete exhaustion because I want to be the best mom, the best employee, the best wife and the best friend. But you know what? I am failing in many of these areas right now.

After over two months away from Cancer Town, I rushed from my last meeting to the car to make it to my palliative dr appointment in town. It felt weird walking through those two doors again and I felt so so so far away from that person who used to walk these corridors pulling an IV bag behind her. I was different now - my hair had grown enough so that it was creeping down my neck, my cheeks were rosy and I was dressed like a businesswoman ready to bust some balls. No one could have guessed that this woman pushing the elevator button was actually a patient - maybe a pharma rep or something! It was empowering. But when I arrived in the waiting area, I collapsed on the sofa in utter exhaustion and the receptionist who immediately recognised me remarked how it had been a long time, that I looked very tired and that she had cold water for me to drink. And you know what? God I was. My levels of tiredness have become far more complex and layered since cancer - there is the normal crap feeling, being very tired, excessively tired, ohmigod my whole body is screaming out in pain tired and then tiredness that actually stops me in my tracks and forces me to submit to it. I never even experienced these extremes after my first cancer round but the second one has been much more dramatic. I know discussing the different levels of tiredness can be so bloody boring and I hate talking about it myself but it is unfortunately relevant in my life right now. But back to the doctor - she could see how worn out I was and that I was running on empty. I described how I was feeling - the feeling of being out of control and completely restless, the fear of what could still happen, my obsession with trying to do it all and the fact that it was just not working. She actually understood me and the person I am. She knew that I was just not one of those people who could easily prioritise mysef and my health. No matter what I had been through, I would still try and do everything like I had done before and if not try to do even more. I talked about my obsessive need to try and make up for lost time despite knowing full well that I couldn't fit 6 months into the last 5 years that I felt had been taken from me. And the feeling of guilt that despite having been through two near death experiences, I still didn't "get it." That is the problem I find - I am very good at articulating how I feel in very open and honest ways and using fancy terms to describe what I am going through like PTSD, anxiety disorders, catastrophic thinking, etc...and it gives people the false impression that I am completely in control of myself and my life. The truth is that I am not. I am killing myself at work and doing so much more then I should be because I am so desperate to feel like I am contributing and adding value and because work is actually a very big and important part of my life. But on top of that stress, I also worry about things like a bump in the night and have been known to go upstairs and check multiple times in a night. I get scared when my husband or daughter goes out alone because of the fear that something might happen. I make decisions based on fear every single day. I get angry when people dont stay in touch yet I simply dont have the energy or concentration to be in regular contact with family and friends and I feel so guilty about it.  And I push through the barrier of exhaustion many many times a day. When you list out those things suddenly it doesnt look like someone who is in control of things at all.

That is the thing with cancer that is often overlooked. We are so well looked after during treatment and we exist in soft cocoon like structures that protect us from the harshness of the outside world. People excuse our shortcomings and no one expects anything from you. Your focus is to survive and that is all. Everyone around you just wants to help and make things easier in any way they can. And as the patient, you have so much more time to do things that make you happy - be with your friends and those you love, have lazy mornings, do yoga and meditate. Basically it allows you to take time for yourself and it may be the first time in your life that you have been able to do so. There are so many services available for you to use and you almost never feel alone. But what happens when that treatment is over? Who looks after you then? I really think that life post cancer can be a truly terrifying place and there is little thought or effort put into helping people transition back from it. You just dont turn back into the person you were before and in most cases you never will be the same again. In cases of extreme treatment, you can suffer from a lifetime of side effects ranging from the physical, emotional and psychological.Not to mention the fear that it may come back - something I understand all too well. For me - in both of my cancer cycles, I had to proactively seek out help as there was very little offered to me and I felt like i had to navigate this road I had never been down mostly on my own. Often times, I had to convince mental therapists that I needed help dealing with post traumatic stress and that my fears, hypervigilance and anxiety were hindering my day to day living. My transition back to work was also pretty much lead by myself as I navigated the choppy waters of being the woman who had breast cancer...again. No one knew what my capacity was and many were clearly uncomfortable being around me or blurted out utterly innappropriate things across the salad bar at lunch. It was awkward and difficult as I tried to figure out what my role was again and how I could once again feel like I was contributing towards something because no one wants to feel like "dead wood." It can be really hard to try and juggle all these things yourself especially as you continually worry about that next scan and what will come of it. Because despite a huge victory, I know, my doctors know, my husband knows that we are so far from out of the woods and we are still dealing with some less then ideal odds. I live every day with that uncertainty. I did tell my doctor yesterday about that fear. How I am working so incredibly hard to build a life up again for the second time yet am continually thinking of what will happen if something goes wrong with the next scan in the summer. It is exhausting having to keep building, to keep going. I kind of think of it like when you build a sandcastle too close to the waters edge and every time the tide creeps on up on you and washes your castle away. But unperturbed, you begin to build it again and hope that this time you will have judged a safe distance. I feel like I am on that beach sweating and swearing my way through a second attempt at building the best and brightest castle that will stand for a very very long time. As i have mentioned so many times before - you just have to hope and never give up in this cancer game no matter how tired and frustrated you get. My castle will rise again.

OBB

Life After Cancer x2

So I finally feel like I am progressing forward and I am paddling further and further away from that island I call Cancer. Kinda like when you are driving away from some place and you keep looking back - watching it get smaller and smaller until it completely disappears from sight. Of course I can still see it and I know it will be there for a very long time...in the background of my life - but I am finally allowing myself to make plans for the future without fear and am able to talk about things I never let myself say out loud. It really is hard to believe that as I approach my 3rd Cancerversary next week, I am in a good place. It is impossible not to look back over the past three years and not think about all the things that have happened and how those experiences have dramatically altered who I am, how I look and how I live my life today. It´s mind blowing really when you allow yourself to process everything.

Many people make huge life changes after surviving a cancer diagnosis. They quit their job and open their dream B&B in Tuscany or they adopt a completely organic clean lifestyle in every way. Despite the fact that I still eat sugar obsessively (often before 7am!), haven´t thrown caution the wind and followed my dreams and still worry about everything big and little, I am definitely a different person from the woman who walked into that hospital room nearly three years ago. I have learned many lessons and things about myself, about those around me and about life in general. The list is long but if I could highlight the biggest things they would be these:

Time is really the most valuable commodity we have. It doesnt stop for anyone no matter how much money or power you have so use it wisely. And don´t put off doing the things you really want to do. No one ever said on their deathbed - Damn I wish I would have worked more!

Forgive those you love if they have hurt you because at this stage of life, people aren´t going to change that much more so we need to accept them for who they are and enjoy the time we have with them.

Don´t make the people you love feel guilty because everyone is doing the best they can. There is never malice in love so don´t expect the worst in people you know only want the best for you.

Always acknowledge others pain and offer empathy.  There is nothing worse then feeling like others dont get how awful you feel - something especially key for those who are chronically ill. I often feel that not a day passes where I don´t have pain or feel poorly and I know it must be frustrating to hear about it all the time but it is also important to recognise how frustrating it is for me too. Not feeling acknowledged just makes one feel worse. I ain´talking about catering to every whimper but just try listen.

Even though you can be afraid of something, silence is far worse then simply letting someone know you are there for them despite not knowing what else to say. Words aren´t always important - but knowing that you aren´t alone is what matters most. I know cancer and serious illness can scare people to the point where they cant even talk about it and want to just run away but think about how you would want to be treated if you were in the same situation. Just validating that this person is going through something intense and difficult is enough - as is a simple "how are you." Ignoring the elephant in the room doesn´t make it disappear.

My bullshit meter is significantly lower then it used to be. I just can´t fake my way through things anymore. When I am angry, I am angry and I will most likely tell you about it and then want to move past it to a better place again.

Grieving loss isn´t just about losing a person.I am grieving the loss of my own innocence, the loss of my two breasts and what I define as feminity, the loss of just being a new mother, the loss of a future without fear of an early death and the loss of a life that I always dreamed I would have. Cancer constantly changes the goal posts and you must adjust your dreams and expectations accordingly. When I thought about the life that I would be living today 4 years ago - I never could have imagined that it would be what it is now. Of course there are wonderful parts of it but I am still grieving many things that I feel have been taken away from me through this experience. Like the fact that I will never have a normal body ever again or that I don´t really know what this cancer will decide to do.

Marriage is not easy. It isn´t easy for anyone (and people are lying if they say otherwise) and it is infinitely harder when you throw an extra set of obstacles into the mix - like moving to a new country, having a baby and then living through cancer together twice - all in less then 5 years. Talk about intense. Cancer has really enabled me to uncover the truths about how to keep a marriage alive. When roles shift from husband and wife to patient and care giver, it really upsets the balance and can be challenging to find your way back. The focus is on the sick person and that can be difficult for the one who must be the rock, the support, the one who has to keep everything ticking over and is rarely asked how they are doing. Many relationships get infected by this disease just as it infects the body and never make it back. You just can never put off the needs of each other regardless of what is going on in your lives. Each person needs to feel loved, listened to and acknowledged - regardless of how tired, frustrated and fed up you are.

Anger. Cancer has made me so much angrier. I get angry at people, situations and things and I am far more vocal about it. Some of it comes from my anger over what has happened to me and how unfair it all has been and I guess it has spiralled out into other aspects of my life. When I see others just not getting the big picture or lacking perspective on things, I want to shake them into reality again. This is not always welcomed as one might imagine but I can´t help doing it. We all complain about so many things and in the process, stop being able to see the really awesome things in our lives. It isn´t about who owes you what (am not talking about money here) or what you feel entitled to, because if you have that viewpoint in the first place, no one will want to do anything for you and you will just become more miserable. It isn´t about what you haven´t done for someone but rather the things that you have done. And it isn´t about the things you do wrong but again - what you have done right. We look for the negatives so often and are so overly critical of ourselves and those in our lives. It is just a sucky way of living and I just can´t be around that negativity as much anymore. Best thing to do is to focus on what is right in your life and you will probably be alot happier because of it.

Being a Mom. Cancer has made me into the most amazing mother that I could have ever imagined being. I put every ounce of energy that I have into being the best version of myself for her. It doesnt matter how awful I have felt or how terrified I have been, I made sure that I was just there for her. In every moment. Cancer took alot from me but it also gave me the gift of extra time with her and it created such an unbelievable relationship and bond between us. She accepts me for who I am and understands without me having to explain. I am her mother. I love her. I brought her into this world with breasts that nourished her and now I no longer have them and to her that is perfectly okay. For her the most important thing is that her mother is here for her every night to tuck her into bed, read her a story, kiss her and tell her I love her to the moon and back.


So my treasure chest of knowledge and insight that I have been able to take away from the single most horrific experience of my life is endless and worth its weight in gold. Maybe that is one of the biggest lessons I have learned...That there is always something good to be taken from every experience you live through or survive, be it good or bad. You just have to be able to see it.

Three years on, two diagnoses later and I am still here...a better version of myself.

Go hug the people you love.

OBB

The Long Road Back

This may be a new record - days short of a full month without an entry! I think after my last one which was so massive and epic, I needed time to let it all sink in and process. Hearing that news was such a shock and signalled the end of one chapter and the beginning of another. Both my husband and I took some time out  to adjust to the news as we had both prepared for such a very different outcome. No one wants to hear bad things but when you think something is going one way, it can rattle you to hear something else. That is one of the many things I have learned from my waltz with cancer - it totally fucks with your head and makes you react the opposite of normal. You can feel slightly lost because suddenly you actually need to get on with your life. No more pauses or stops, I have to pick up the pieces of my life again and start rebuilding the foundation  brick by brick.It can be scary too - cancer can also be comforting in a weird way because of the routine nature of it and the lack of expectations. When you have cancer, people expect very little of you and let´s face it - people are extra nice to you and put very few demands on you, and that can be quite nice. Now that everyone knew that I was cancer free did my cancer safety net disappear like all those cancer cells did? I know and all those cancer survivors know that my journey to recovery is still far from over and just because the cancer is gone, the person I was before may never return fully. The treatments I have been through, two rounds so close together, ravages your body and my doctors have said I may never be the same again. We don´t know but I know the limitations my body still has and I worry that others will quickly forget that the healthier and better I look. I hate myself alittle as I read that last sentence back because it sounds so weak and cowardly. Like I am already making excuses and still living through my cancer even though I dont have it anymore. A very dear old friend perhaps put my thoughts to words best when she wrote this to me last month before we even knew everything was okay:

"Know that when that scan comes back clear, only then will you allow yourself to move past the "girl with cancer" phase of your life behind and be who you are now. But you don´t have to entirely leave her behind as she´s made you who you are today...Nor do you have to leave behind all your friends, support team and other methods of support that have gotten you through this phase. As the next phase of life develops, other support systems will come into your life and the cancer ones will fall further and further back into the periphery. You don´t have to automatically be completely without them. Right now you can´t imagine life without them as they have been your life. But just look at how well you´ve adapted to and thrived in all other phases of your life. New phases brought new wonders into your life. The only reason you dont know who you will be when that scan come sback clear is because you haven´t allowed yourself to dream it yet. But know that you will know what to do and who you want to be. You will walk down that road and it will be more than interesting enough to keep us all reading. "

She really captured it all so perfectly and so eloquently. Just some of the many reasons why I love her.

After nearly a month, the dust has settled and I am allowing myself to be more excited about the future. I cannot tell you the joy I took in walking into work and telling everyone (with 100% honesty) that I was cancer free. It felt good and I felt like I could finally allow myself to rebuild that part of my life without worry for the tomorrows. When I told my daughter that mommy was better and that she wouldnt be going to the hospital too often from now on, I felt genuinely relieved. I had bought myself more time - time where I didn´t need to worry about whether I would be here for her. And spending time in Canada with my family was just priceless. The best trip I had perhaps ever had back.  It had been years since we had all been together (well before the cancer crap hit) and it was so fitting that the first time we were all reunited, we were also able to celebrate my remission. Many glasses were raised - despite my taking about 2 hours to finish a single glass! Oh how times have changed. :) I could see the relief in my family´s eyes especially my mom´s who I think was so terrified by how ill I was the last time she saw me. Of course she never showed her fear to me but I knew it was there. I am her baby and she is my mother - no mother should see her baby suffer. And my Cancierge - he is happy with the news but also adjusting to a new normal. I think we often forget how affected others are by the cancer experience and he has been my loyal partner in crime through it all though rarely showing his stripes. He never had to tell me because I knew how scared he was of losing me. Thankfully I hope we have many many years left together to make up for the last few years of hell.

I know this is one hurdle overcome in a long, long race and that we are still very far from the finish line. However it is a noted victory that I will never ever forget. Cancer is far too greedy and takes far too many good people so any opportunity to get one over on it, is a victory in my eyes. I just wish so many others had been given the same chance as I am to live again. Cancer is ruthless and wicked. But I wont forget how the odds were stacked against us, the numbers  were not good and no one knew how this would play out - yet we still won. I think this just might have restored my faith in things actually working out. It ain´t all bad.

Hugs,

OBB  

Read This

On my way to bed last night I stopped by my daughters´room and kneeled down by her bedside. I listened to her breath in and out - little whistling sounds and studied the look of utter peace across her face. Like many mothers, I could sit and watch my child sleep for hours. I whispered in her ear "Mama loves you soooo much. You will always be my baby no matter what." I nearly choked on the last words as a tear trickled down my cheek when I thought about the possibility of not having the chance to be her mother as she grew up. It just made me feel physically ill - thinking about losing out on that experience of molding the child I had created. Because you see - last night when I went to bed I didn´t know what was going to happen today. All I knew was that my doctor had asked me to come in to get the results from Tuesday´s scan. So many scenarios swirled around in my head and most of them were of course horrifically awful. So when I dropped her off at daycare this morning,  I wondered about whether this would be a major moment - the last moment where things would still be normal and that maybe, just maybe when I returned to pick her up again things would be so unbelievably different.

But...

It seems that life has finally given us hope and a lifeline. After three years of disapointments and crushing defeats, we have finally claimed a victory against the Big C. When I saw my doctor wave us in, he smiled - in that comforting "everything is going to be okay" kind of way. Because to be honest I had been close to hyperventilating in the waiting room. We sat down and he said that things actually looked quite good. I think both my husband and I were in shock as after what we have been through, we pretty much had prepared ourselves for the worst. But it seems that the hell I went through last year paid off and there is...Drum roll people - NO EVIDENCE of DISEASE!!!!! Yes that is right folks - I am officially and medically speaking cancer free. It feels good to say it and know it is true. I have earned my second survivorship pin with a PET scan to prove it. I think we should go out and buy a lottery ticket because we definitely have beat the odds on this one and kicked the stats out of the water. I was the first breast cancer patient in Norway to receive this kind of treatment and I am happy to be a success story. It feels fantastic and though my doctor is far from the emotional vocal type, I think he is pretty pleased that he managed to rid my body of this dreaded disease. Of course this is cancer we are talking about so the road doesnt end here and we have many more of these scans to get through but getting through one is reason enough to feel relieved and ecstatic. We did it everybody! See - cancer doesnt always win. :)

There are other things to discuss but I will save those for another day because today is simply going to be the day I was told that I kicked cancer´s ass. So what do I take from this whole life altering experience? Well - as cheesy as it sounds, you really can´t ever give up or stop hoping for things to get better. In just 6 months, I went from wanting to stop chemo because I felt like it was killing me (ironic choice of words) to celebrating slaying the C-dragon to the ground and being able to look at my future with confidence instead of fear. And I finally get to go to Canada! Woohoo!

It is Thursday which I think is acceptably close enough to the weekend to warrant cracking open some champers or wine. So please raise your glass with me and let´s all say together - FUCK CANCER!

Thank you again to all of you who helped me through this latest saga. Friends and family really are the best things a person can have and I think life would be empty and meaningless without them.

Here are some visual reminders:

Love from a super happy cancer free OBB!!!

I wish I had a Crystal Ball

“After you find out all the things that can go wrong, your life becomes less about living and more about waiting.” Chuck Palahniuk, Choke


It is the second Sunday in a row that I have spent feeling awful and in bed most of the time. I felt alot like I did during chemo - the ache through my entire body, every tiny little movement and action feeling like such hard work, having no energy at all (i.e: having to sit down in the shower) and just feeling like absolute crap. Both days - I have slept hours throughout the day and had the most awful dreams. Mind and body are clearly out of sync. The thing is that I am not ill nor am I recovering from some huge night out (god I wish) - I am simply reacting to doing too much the day and week before. Honestly I find it so unbelievably depressing how cruel and punishing my body can be to me. It´s like when the pot starts boiling and the bubbles get closer and closer to the edge, you run to catch it to turn the temp down but instead everything erupts down the sides and everywhere. That is an accurate image of the way my body reacts when I do too much. The week was insane - first week of working 3 days a week, 2 huge birthday parties to host and the whole scan looming in the background. I know I pushed myself and I had this cold that was teetering on the edge of becoming full blown flu. It was just too much for me but of course I didn´t listen to my limits or to my body and I just pushed and pushed and pushed. Then BAM! Sunday it all comes crashing down and my body forces me to actually take the rest it needs via bed hostage tactics. I never experienced anything like this after the first cancer round so I can see how much more all of this has affected me. Every day is a new learning lesson for me and my newfound limitations. But god does it make me so crazy angry - that my 34 year old body (yes I had a birthday this week) can´t make it through a busy day with no rest without completely collapsing the next day and refusing to work. It isn´t normal but then again what the hell is normal about this life I have been living for nearly three years now.

I can´t believe cancer has been my dark passenger for so long. You almost start forgetting what life can be like without it. This time, three years ago, I was in pain, I knew something wasn´t right but I didn´t know how wrong it was. And now I feel like I am staring down a road with two paths and not knowing which one I will take. I want things to be okay because I just don´t know if I could go through more of this. I don´t know if my body could take more and I never thought I could or would feel like that. But do you want to hear a confession? I am also scared of things being alright too. Thinking of the results coming back clear makes me feel weird and unsettled. Cancer has been such a huge (albeit totally shitty) part of my life for a long time. In some screwed up way, it becomes a part of you and your identity. I am the girl who got breast cancer twice before she turned 35. By losing the cancer piece, you need to move on from the whole experience as you tick off each clear scan and it can be unsettling moving away from the safety net you can get from cancer. I don´t know if I am making total sense here (cancer - a safet net? Say what girl?) but maybe those of you who have had cancer before will get it. I of course never ever wanted to have cancer, but once you have it, the thought of having to just get on with everything again can be quite terrifying. Who am I if I am not the girl with cancer? Like this blog - would my normal life really be interesting enough for you all to read? So I feel all messed up about it all. I remember in October 2012, when my husband and I were waiting for the results of my biopsy following a positive pet result. We were so prepared for the cancer to be back and had made plans and strategies - so when we got news that the biopsy was negative (the biopsy was in fact wrong as they had missed the tumour by mm but hey thats just details), we felt deflated, depressed and so utterly lost. I guess that is kinda how I feel right now - lost. There is so much riding on this scan and now that it is nearly a day away, I still feel so unprepared. My doctor is being so positive though, which he never used to be, so I am trying to join him on that train of thought. When I am trying to fall asleep or wake up in the middle of the night, all I think about is that day we come in for the results. Any cancer patient or survivor can tell you how terrible that feeling is - the nausea, your heart beating a mile a minute, the analysis of everything around you.  I think of how I will feel that day and what his face will look like when he walks. Will he smile in that happy everything is okay way or in the "you are going to die" pathetic way? How will he say hello? Will there be smalltalk? Dr Sunshine tells me that I am always trying to find answers to questions and things that are impossible to know. Like I expect some crystal ball to be sitting in the oncology ward holding all the answers to everything. But like Tuesday when I lie there as the machine scans every inch of my body and like that day I go to hear my judgement, I will have no idea what is or will happen until it actually does. Acknowledging this lack of control clearly doesnt make it any easier but who said any of this was easy.

I had a dream last night that I was being chased by something I couldn´t quite make out. My chest was pounding, my legs were tired and fear rippled through my body. I just kept running because even though I couldn´t see it, I knew it was bad. I kept trying to will myself to wake up to end the dream because I was so scared. You ever have those kind of dreams? But I couldn´t stop the dream and it kept going and going. Kinda sounds like the last year of my life. However the important part was that as awful as the dream was, I did wake up and it did end. And I was okay. So regardless of what happens on Tuesday, I will tell myself what my husband wrote in my birthday card this year:

"Everything will be okay in the end. If it´s not okay, it´s not the end."

Love,

A slightly older and wiser OBB

PS: Thank you for all the emails, calls, packages, cards and messages from all of you from around the world. Birthdays are ever so special to me and so many of you joined in to celebrate it with me. I am grateful for all the love I have in my life. This year will be my best yet!

Chemo Brain...Uncovered

Hello again world,

Here we are nearly two weeks away from Christmas and almost 3 months since I finished treatment. Both have creeped up on me unsuspectingly and it feels like time is truly flying by. I am still working and it is good but also very challenging. I am discovering that - thank god I still have a brain that has good ideas and can perform but I am also seeing that my newly established limitations are frustrating. I know I am not the same girl I was in my 20s who loved working long hours and getting to the office first despite having been out partying til 4am on a Tuesday night! But before this latest round, I had more endurance and could just do more. Of course my priorities changed after having my monkey but I remained driven and motivated. However last week, I worked two days in a row and was so tired in the evening that my husband found me sitting upright in bed with my face firmly planted in my Ipad. I never pass out ever when I go to bed so it was a sign that the ol´body was dealing with a new set of challenges and it was struggling. I am also noticing some symptoms that can be classified as "chemo brain" - a condition that has been debated alot in the cancer world. Some people (doctors included) don´t agree that it actually exists and that it is more psychosomatic then actually a physical condition caused by the chemicals. You know us cancer peeps - anything to milk the sympathy card longer! (just kidding). But in all seriousness - I am feeling more and more of these so-called afflictions.

The Mayo Clinic defines chemo brain as:
Chemo brain is a common term used by cancer survivors to describe thinking and memory problems that can occur after cancer treatment. Chemo brain can also be called chemo fog, chemotherapy-related cognitive impairment or cognitive dysfunction.

Let´s see...

I used to be a supernova in the morning who loved to get up early to ensure I had time for sun salutations, my multistep hair straightening process and getting my child looking "picture perfect." However these days, I am struggling with the daily grind and heavily depend on Disney Junior to buy myself enough time to cram everything in and I take more then double the time to do even less then I did previously. And the stress and frenzied nature which I do everything does nothing for my irregular heart beats! Like a chicken with its head cut off people.

frustration.com - I have prided myself on my consistent mood and high level of patience pretty much my whole life. That is what works with my husband and I - we balance each other in terms of our moods. I rarely have changes in how I act, feel and react. I am not an emotional desert but I dont get as emotional and irritated and it definitely comes in handy when dealing with a toddler. However these days I feel myself wanting to scream over the little things and get angry when I fubble with something or can´t get the frickin´carseat sorted. It is a new feeling for me and I don´t like one bit.

Brain freeze: We all have moments when we forget things - it happens to everyone. Unfortunately my frequency of forgetfulness has increased dramatically as of late. If I had a kronor for every time I said "hang on a minute, I can´t remember that name, thing, place....but it will come back to me in the next 30-45seconds" - I would be sorta rich in a coin kind of way.  Sometimes I find those missing words but other times they seem to be on their way to neverland and never come back. It makes me anxious as I don´t know if my mental sharpness and quick witted nature will ever be the same or will I forecer coast along on slow mo?

Let´s talk about Focus: Okay I have never been someone who accelerated at math or complex problem solving nor do I like to do things I find boring. Who does really? But these days my avoidance of doing difficult things that are unpleasant is even worse. I delay everything because it is just so bloody hard. And I even delay things I want to do like sending an email. returning a phone call or finishing a project. The intent is there and I feel so much guilt over not doing it but I still don´t do it.  I only have the capacity to do one thing a day really and sometimes I don´t even get through that. So no - it is not personal. :)

Fatigue:  I am not sure this actually technically fits into the "chemo brain" box as it it more of a physical affliction but I feel that my fatigue contributes greatly to the things I listed above so definitely worth a mention. Fatigue makes all of these so much worse. And boy am I dealing with fatigue levels that I have never ever known (and I was a swimmer for years who woke up at 4:45am so I know tired). I wake up exhausted and sore no matter how early I went to bed. I need to lie down and rest every afternoon or else I fall apart mid evening to the point of collapsing. Seriously - forget Sunday mass, naps have become a devout practice that cannot be missed. And when I get tired things hurt...alot. A few weeks ago, I attended my work Christmas conference and party and suffered from debilating chest pains for the next week just from a lack of sleep. Honestly where did the jagerbomb girl go that we all know and loved? Oh yes that is right - she got cancer! And by the time I have done everything i need to do in the evening, I hobble around like an old woman with aching joints from the temporary arthritis chemo gave me. It is hard not to get pissed off about it all and tell the silver lining to fuck off! I want my old self back stat Roger!

So following the latest round in the ring with the C- monster,  I am now a firm believer in the existence of "chemo brain" and all the associated issues that come with it. I feel for all of those who have experienced it and for those who are still wading the deep waters of it. Doctors still don´t know very much about it and research has only just dipped its toes in the water regarding it. I hope we find out more and discover new ways to treat it and more importantly properly recognise it. For those of who have been through it, what are your experiences?

Hope everyone is enjoying the holiday season. Someone please have an eggnog for me!

OBB xxx

Requesting Normal

It has been nearly a month since my words graced these pages and I don´t quite know what has happened. Life of course got in the way again but I also just haven´t been able to write. Nothing came to me, no inspiration, no clever ideas or even dramatic events to recount. I have told you all many times before that i can never just start writing without some kind of idea or thought to work from - the entries never end up being published as they just never quite feel right. But today i am pushing through the wall to try and get something out there so you all know how things are going. I most definitely havent been sitting at home for the last four weeks twiddling my thumbs - quite the opposite really.

So against doctors advice, I went back to work a few weeks ago. I know it sounds crazy especially to people who have had cancer and understand the toll this disease and subsequent treatment takes on you. I do get irritated when people tell me that going back to work is a good thing and that why I shouldnt I do it - it can´t be that difficult. Rule one of cancer - Don´t talk about things you know nothing about! Trying to get back to a normal existense after cancer, once, is tough, but twice is hell and I have definitely underestimated my own self this time. It was important to me to start my life again hence wanting to work again and I knew my body and mind were far from ready but then I felt that I probably would never be ready so I needed to just leap. There is also this inate restlessness and frustration within me and an obsessive desire to get things going again. My life has been on stop start mode for years now and I feel like I can´t wait around anymore. None of this is what I planned for myself and there are so many things I wish were different but can´t change. I especially struggle with my career which was always incredibly important to me. It has been stagnant and on hold for four years now at a time when I should be at my prime. It is such a hard pill to swallow as I watch everyone sprint past me while I keep getting pushed further back. And what I realised after my first day back is that I may never be the same again. This latest round of treatment completely annihilated me and things I took for granted before are challenging. I get frustrated over minute things, I struggle with multitasking and completing tasks under time constraints, I have to lie down and sleep every afternoon religiously or I literally collapse from exhaustion in the evening and I worry about everything. I also feel like things are different for me at work - now everyone seems to know about me. I have lost my anonymity - my sense of being normal. The reactions differ dramatically from person to person - some tear up when they talk to me and hear about my struggles. They are often people who have young kids too, mothers, or people who have experienced cancer through a loved one. Then they are the others who avoid me in the lunchroom or the hallway - people I used to share a joke with and chat with in passing. It is hard to see them knowingly run the other way but I also know it is up to me how I allow people to see and define me. I know I scare them because of what I represent - someone who shouldn´t have had this happen to her.  If I want to be the cancer girl then so be it but if I want to someone else I also can - it is up to me. But sometimes it is so hard to play the normal card because it often involves pretending that everything is okay when it isn´t. And god do I feel so much self doubt and vulnerability. I question my ability to do a good job, to handle stress, to speak in another language, to be valued for the work I do and to not be seen as a burden to anyone especially my employer. Right now I feel like an albatross around their neck - I can´t give what I want to and it feels like such a long way back up this mountain that I am standing in front of. I wish every single day that i could wake up tomorrow and be normal again - no  morphine patch permanently fixed on my arm, no handfull of pills I swallow every evening, no flat chest covered in scars that make me feel like less of a woman, no feelings of such exhaustion that I cant take another step and no fear of the future and what other struggles lie ahead. I hate to sound like such a depressed Debbie here (I hate whingers!) but this is exactly how I feel. I hope things get easier - everyone forgets over time including myself and I hope, like my scars, all of these things will fade until they eventually disappear forever. As I always say - we can always hope.

Aside from my new venture back into the working world, I am still struggling with heart issues and visited the cardio doc last week. Several tests later, he proclaimed there would be no fast solutions to my problems and that this was most likely caused by my misshap with the Port incident of 2013. The heart is wired electronically in such an intricate way that any little scarring (in my case caused by a little wire that fell into the heart) will cause problems. None of it is life threatening but boy is it frickin´annoying and given the fact I have been seriously ill twice and my father and grandmother suddenly died from heart problems, I cannot just stay calm when my heart is acting wonky. It just feels like more bad luck on top of a whole mountain full of it! We will do more tests in a few weeks to determine the extent of it and act accordingly. As you can imagine - I have been struggling with anger issues as of late. And the clock is ticking on the PET which is now just a little over a month away. I feel like the last few months post treatment have been anything but restful with all the crap that has happened.

"Dear God, make me a bird. So I could fly far. Far far away from here."

Perhaps somewhere preferably with a beach, 24 hour on call massage therapist and unlimited amounts of jelly beans. :)

Love,

OBB

Six Digits Later - Part 2

Hi Again,

Just to let you know that I made a few revisions to Part 1 -please check it out again.

So Part 2 of my six digit celebration involves hearing what some special friends have to say about the past few years. It was hard to decide who to ask to spill their heart as there have been so many amazing people supporting me on this tough road. I decided to look at the three main parts of my life - the early years, the London years and my present Norsk life. I asked three girlfriends to write about how my illness has impacted our friendship, what more they learnt about cancer and any advice they had for others. What came out of this exercise was beautiful emotion, touching memories and a whole lot of love. I wish I could have included little snippets from the thousands of messages I have received via this blog over the past few years but I will save that for the book. :)

"I think if I've learned anything about friendship, it's to hang in, stay connected, fight for them, and let them fight for you. Don't walk away, don't be distracted, don't be too busy or tired, don't take them for granted. Friends are part of the glue that holds life and faith together. Powerful stuff." Jon Katz

My life is so rich because of the people that are in it and I appreciate these three ladies putting their emotions on their sleeves. Not everyone is as comfortable putting it all out there so thank you.

1) The Montreal Years by Lara

Kate and I met as 4 year olds in a local preschool program. For those blog readers out there that don’t know Kate personally, you should know that she has an amazing sense of humor, and to this day, can make me laugh until I cry. One of our favorite things to do when we were young was to stage very dramatic, fictional skits. And looking back, some of the scenarios we came up with were downright bizarre. We invented a very intricate storyline about two old women named “Milly and Tilly” (played by us) who were essentially cranky old biddies who made fun of one another and screamed off the porch at (imaginary) neighborhood kids. We coerced my two little brothers to play their unfortunate husbands, and would rope them into what we thought was our hilarious game by barking orders at them to “make us lemonade” etc. To our parents’ credit, this somehow did not alarm them.

Kate and I are very different. By 12 years old, Kate was close to 6 feet tall, and I was about 4 ft. 5. She has older siblings, and knew the “ways of the world” before I did. She had already fallen in love by the time I was getting fitted for my headgear. And I am a land mammal, while Kate on the other hand was born to be in the water. She was a nationally ranked swimmer and incredibly strong and fast in the water. I never heard her complain about the long hours at the pool, the early wake ups in the middle of winter, and having to juggle schoolwork with swimming. (She did however have a way of getting people to massage her back and shoulders  - often.) Kate was focused and dedicated, but humble. She never took herself too seriously to have fun, laugh, and celebrate her friends’ triumphs. We had so much fun together, and there are so many memories … of food fights, bike rides, listening to music in her room, and dreaming together about what life had in store for us. Neither of us could have imagined that she would get cancer at 31.

I was planning a one-year move to Sweden when I heard from Kate in early 2011 that she had been diagnosed with breast cancer. Let me just pause here to emphasize that cancer sucks, and I hate everything about it. But in a way, Kate’s diagnosis brought us closer together. During Kate’s first round of treatment, I was only a bus ride away from her after years of living on separate sides of the country or world. It turns out that all the memories had been waiting there like little seeds in the ground and before long, a new friendship had grown out of the old one. I am so grateful for that.

When I spend time with Kate, I am aware of every version of her, past and present. The wide-eyed child, the comedian, the poet, the romantic, the fierce competitor, the intelligent woman, the ambitious professional, the adventurous spirit, the lover of life, the mother, the wife. And always, the loyal friend. What I have learned from being Kate’s friend throughout two cancer diagnoses and rounds of treatment is that cancer does not define a person. Cancer does not sum up who Kate is (it couldn’t if it tried!) even though it has done everything in its power to take over. I have learned that thoughtful questions are often more supportive than advice. I have learned how to hold hope when sitting with a friend in the dark places. I’ve learned that there is such a thing as a badly timed joke, but that laughter is ALWAYS good. And I think our make believe game about being old women was just practice for the day when we’ll sit on a porch somewhere with white hair and lined faces, and make each other laugh.

2) The London Years by Charlotte

What do you write about your friend who has cancer? She is brave, she is beautiful and she is OBB. Now oBB. She is also honest, afraid, and vulnerable. That's what I've learned from having a best friend battling cancer, it's a constant tale of 2 halves that give as quickly as they take away. It breaks your heart, yet the fight gives you hope, and it leaves you angry whilst showing you depths of friendship and love you never knew possible. You'd never wish the experiences Kate's been through on anyone but it has taught me huge amounts; and in many ways it has given our already wonderful friendship strength to be forever treasured.
Kate and I met in London almost 9 years ago and we lived a very happy, sometimes scandalous, few years together! London brought Atle and Kate together and I watched her grow into a woman ready to be a wife and mother. Looking back, yes we were close, but in some respects we were in danger of our friendship becoming another transient relationship that you often find in London, great fun but once distance (such as Kate moving to Oslo) is added into the mix, the depth of friendship can waver. However, when Kate was first diagnosed, we became closer than ever. Cancer can take an enormous amount away from you, but it gave us a solidarity that now nothing will ever change.

The London days now feel like a lifetime ago, Kate, Atle, and Ida have been through so much since then and I've seen my darling friend go through pain, heartbreak, and unimaginable fear with dignity and unwavering love for those around her. Her writing has allowed us into her deepest thoughts, and her ability to create hope and humour out of some of her worst experiences has inspired others fighting this awful disease. As her friend, I've felt my own array of emotions during this time from enormous amounts of pride and respect, to deep sadness and anger on her behalf. I've also felt terribly selfish at times but I've learned that's ok. It's ok to continue your life as best you can and enjoy it. Kate would hate it if we were all miserable on her account. It's ok to tell her to pull herself together on the rare occasions she has truly dark days and it's ok to cry tears for her and for you because you are going through this too. That's the thing with cancer, it doesn't just happen to the person diagnosed, it's a team effort and everyone close to that person is affected and is allowed to feel their own pain from it.

My advice to anyone in a supporting role would simply be to appreciate there are no hard and fast rules on what to do, you won't always be perfect and you won't always get it right, you'll say the wrong thing sometimes and you'll inevitably not know what to do most of the time. Just be there, listen, stay true to your friendship (because it'll keep you both sane) and have your own support network you can fall on when you need to break down.

Kate, you have always been the most wonderful friend and in the face of real adversity you have remained one of the people I rely on most in the world. You've been mid-chemo and checking in to make sure I am ok, you've worked tirelessly to ensure you remain the wife and mother Atle and Ida need. You've helped create the woman I now am by teaching me about true courage and valor, my respect for you is endless. We are both far from perfect but I'd argue our fun, honest, unquestionable friendship is, and for that I am eternally grateful. We are no longer the carefree girls from those distant London days, we are young women with battle scars of varying degrees that make us people I admire.
Atle, thank you for being the man who loves my friend. Ida, you are a delight in every way and you bring joy to us all. Every piece of love and sense of pride I have for Kate, I have for you both also in equal measure.

3) The New Friend

We were still getting to know each other when Kate was diagnosed with cancer. Being a scientist of some sort, I knew about Herceptin, the BRCA genes and the problems with mammography screening, but I was completely naïve about the particular issues faced by young women with breast cancer.  I saw my (new) friend make difficult decisions like foregoing immediate breast reconstruction, as it would mean precious weeks where she would not be able to cuddle her baby.  I saw how she sat and held and loved my new baby while facing great uncertainty about her own ability to conceive again.  I saw how over and over again, time away from her child was one of the worst consequences of her treatment.  There have been many many nights when I have been up with my own sleepless, screaming children and have felt an immense gratitude for being present, for being able to care for them.  If it hadn’t been for Kate´s example, I likely would not have found this grace.

Finding ways to support Kate since her diagnosis has been easy.  Although she often uses humor to communicate what she is going through, you can hear what she really needs if you listen carefully enough. And by listen I mean listen in the broad sense – to the silences, the hesitations, the body language. I also recognize that Kate´s needs are often (always!) bigger than what one person can help with alone – so I often reach out to her other friends (and not only the closest ones) – and tell them the specific ways I think we can help.

It is natural and perhaps necessary that friendships evolve when someone is facing a major illness.  Shortly before Kate started treatment, I remember saying “I know I am not your best friend in the world but I am going to try to act like I am.”  I have definitely tried to live up to that, and in doing so gained Kate as one of my best friends in the world.